Professor Julia Downing, MyPal team member and Chief Executive, International Children’s Palliative Care Network, explains how the MyPal Child study aims to incorporate ‘gaming’ – now a part of everyday life for many children and young people – within the healthcare system in order to help them engage more actively with their illness.

John is 12 years old and has been diagnosed with acute lymphoblastic leukaemia. He has been admitted to hospital for treatment and is missing his friends and feeling quite isolated. He feels very tired and unwell and whilst having treatment he tries to distract himself by playing games on his tablet. He and his friends often play computer games together and he finds that playing games makes him feel that he is doing something ‘normal’ and it helps distract him from his treatment.

Professor Julia Downing

Over the years, gaming has grown in popularity and has become a regular pastime for many people, including children. In July 2019, we heard how a 16-year-old had won the Fortnite ‘World Cup’. Gaming is now part of everyday life for many children and young people whether these may be educational games, sports, or more complex games. In 2011 over 91 per cent of children in the USA between the ages of two to 17 years old were playing video games, and a more recent survey found that children were playing on average 15 hours of games a week (2.13 hours a day).

Thus, if we are going to communicate with today’s generation, we need to be looking at how we can incorporate ‘gaming’ within the healthcare system. How we can develop what is called a ‘serious game’, one designed for a purpose other than pure entertainment that will help us improve the provision of palliative care to children and young people. I am familiar with the use of technology in palliative care, and have been involved in studies looking at mobile phone and tablet technology; however, nothing quite so elaborate as a game!

I am not of the ‘gaming generation’ and it has been a steep learning curve for me being involved in the MyPal project (1) Fortunately, we have a great team of technical experts who have been able to explain how the game will work, what it will achieve, and how we can collect data. Our game will incorporate electronic Patient Reported Outcome Measures (ePROs), through which the children and young people will be able to regularly report changes in their symptoms and condition. Hopefully the game makes answering the ePROs entertaining and enjoyable. Through the game, as a ‘diver’, players will be taken to a ‘beautiful, alien underwater world, visiting corals, caves, tunnels and ancient civilisations, and finding beautiful things for their collections’. Game developers Stefan Hoffmann and Robert Schraut of Promotion Software GMBH (one of the MyPal partners) explain more about how it will work in the MyPal newsletter that is being launched this week.

This image is not from the game itself, but is one of the many images inspiring the game’s designers.

Whilst the game is still being developed and the ePRO system incorporated within it, we are excited about the potential within palliative care. Robert Schraut and Stefan Hoffman note that “to gamify a questionnaire to get better and more detailed results is something that we expect to work well. If proven successful, we could think of variations for all kinds of paediatric problems. Still, the design of the app isn’t generic: it’s tailored for the palliative needs of MyPal’s children participants.”

Likewise, Prof Dr Norbert Graaf, from Saarland University in Germany, one of the clinical sites for the projects says “We hope the MyPal system will have such an impact in the field of palliative care that it will be widely taken up by those involved with palliative medicine.”

MyPal (Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems) is funded by the European Commission and started on 1 January 2019. The project aims to improve communication between cancer patients and their medical team by using specially developed apps for reporting symptoms.